COSA 2016: Work After Cancer session review by Professor Ian Olver AM, for oncologynews.com.au.
A session at the COSA (Clinical Oncology Society of Australia) Annual Scientific meeting which was organised by Bogda Koczwara and included Louisa Gordon, Vikki Knott and myself featured the issues of returning to work after cancer. It was based on a project co-ordinated at Flinders and funded by Cancer Australia.
Cancer survivors are 1.4 times more likely to be unemployed than others, particularly from blue collar jobs. In fact, 30% of previously employed cancer survivors do not return to work in the 5 years following diagnosis. As expected, this is a major contributor to the 50% drop in income that 70% of cancer survivors report. In that light, it is sobering to discover that out of pocket medical costs for patients with cancer who are aged under 65 years, may be 3 times that of comparable adults without cancer and more than their counterparts with other chronic diseases.
The barriers to working after cancer may be physical or psychosocial sequelae of cancer or its treatment, or simply the lack of flexibility in a workplace to provide light duties or part-time employment in high-functioning jobs. The result can be a loss of self-esteem, financial security, the distraction that work provides from focussing on health issues and the impact on quality of life. Moreover, in a paper published in the Lancet in 2016 by Dr Maruthappu and colleagues, unemployment was associated with an increase in all-cancer mortality, remaining for at least 5 years. A decrease in public expenditure on health, was also associated with increased mortality, an effect mitigated where universal health coverage existed.
Louisa Gordon reported on the Australian experience from studies that she and others have performed on financial toxicity, where financial pressure is due to having cancer.. There is a difference between the financial pressure on public and private patients but the private patients can fare worse with excessive gaps between the reimbursed fee and what is being charged. Non-Government health expenditure is climbing in Australia, to help meet the need. Australia is certainly up with the top countries in the OECD (Organisation for Economic Co-Operation and Development) when the proportion of out of pocket expenses to total health care spending is compared.
Although there are many international studies of financial toxicity, most are cross sectional, lack a non-cancer control and are not population-based, precluding meta-analysis. What can be concluded is that the patients most at risk are young, females, with low income at baseline, with more advanced cancer, having systemic therapies, and living remotely from a cancer centre.
The impact of financial toxicity is a poorer quality of life with a higher treatment delays, non-adherence or the forgoing of care. This financial toxicity is not only due to medical expenses but lost income from employment and loss of insurance.
Interventions for returning to work
There are many small sub-optimally designed studies which don’t account for variation in health systems or individual circumstances affecting the desire to return to work after cancer, nor consider disadvantaged groups.
Vikki Knott described the findings from 3 Australian qualitative studies to which employers, employees and oncology health professionals contributed. Key findings included a reluctance for cancer survivors to disclose their diagnosis and how that is balanced with the importance of colleagues knowing. There may be a lack of confidence in fulfilling job requirements when returning after cancer treatment. This can all be exacerbated by communication difficulties, often driven by attitudes towards cancer; that it is a “death sentence”.
These studies highlighted the need for a structured approach to returning to work, which often needs a graded plan. There are no guidelines for people in this situation and a lack of experts or support services. Clinicians should ask about issues with returning to work and refer patients to available resources. Even where experts exist they may be difficult to identify and link into. All of these issues are exacerbated in groups who are already disadvantaged in delivery of services such as those who live in rural and remote areas and Aboriginal and Torres Strait Islanders.
The Work After Cancer website
Bogda Koczwara reported on the online resource that was the result of the Cancer Australia project. Work After Cancer is a website that brings together information for patients, practitioners and support providers about returning to work after cancer. The project to create the site reviewed 14,254 papers in 6 databases for interventions for cancer and non-cancer conditions, but only 26 full texts met the review criteria and of 4 in cancer only 1 was a randomised trial. Focus groups were conducted with rural GPs and consumers with one group each with cancer centre staff and aboriginal health workers.
The focus groups revealed interesting information about enablers for returning to work being good workplace communication and education, and flexible work conditions. This allowed for a return to normality after cancer and instilled confidence in the patients about working after cancer. The barriers included an inability for practitioners to assess the impact of a particular cancer and its treatment on work. Alternative income sources included income protection, access to superannuation or disability pensions. Also patients had altered priorities about work affording less priority than at diagnosis with more time focused on self-care.
A stakeholder meeting was convened which involved Centrelink, Business SA, Unions WorkCover, Non-Government organisations and Occupational Health and Safety experts. Strategies that were identified to address the issue of working after caner included the delivery of care closer to home, the need for employers to embrace rehabilitation and retraining strategies, with staged return to employment accounting for the capacity of the employee after cancer.
A review of existing resources revealed 28 Australian and 4 international resources usually online but generic and with no interconnection. Again, none focused on disadvantaged groups. The website that was created is grouped according to whether the user is a patient, healthcare provider or employer. It was specific in answering the question, “What do you want to do?” It also provides general information on the benefits of work, issues with work and cancer, and rights and responsibilities, but also includes specific information for younger patients as well as rural and ethnically diverse patients.
Here patients can access return to work plans, stories from other survivors, and links to the existing resources in Australia and overseas. It is a living document that can be modified as needed.
In future, we need to strengthen the evidence behind potential interventions for cancer patients that will assist their return to work. We will then need to make the evidenced-based interventions system-wide.